Chronic Hyperplastic Eosinophilic Sinusitis

[UCMom]

My 13-y-o son has been dxd with this relatively rare (less than 5%) inflammatory  type of sinusitis (non-infectious, non-llergic), which is considered "asthma of the upper airways." Two surgeries have not been effective for long; neither has treatment with inhaled steroids (Flonase), inhaled antihistamine (Astelin), a leukotriene modulator (Singulair) and a proton inhibitor. A recent sinus scan showed a return of disease (ethmoids completely opaque), which I expect to worsen once the winter viruses set in. Surgery is no longer considered an option; if it gets to that point again, the only treatment will be a course of oral steroids, which provide only temporary relief. Symptoms include congestion and drainage (always present) and periodically, headaches, sore throat, ear pain and extreme fatigue which at times is debilitating. The pulmonologist's prognosis is that though symptoms may fluctuate, there is no cure and he will always have this. He also has had a total colectomy for medically resistant ulcerative colitis, another autoimmune/inflammatory condition. I would like to find out if anyone knows whether the two diseases are merely similar in nature or possibly related (answers from his pulmonologist and GI are not clear-cut -- I don't think even they know for sure); I also would like to know what universities might be the leading centers for research in this area and might have additional insights, suggestions for other treatment options, or clinical trials. I have serached the net and not found much -- most treatment possibilities "need additional data and research.

[National Jewish]

Research in the area of chronic hyperplastic eosinophilic sinusitis is being done at the Asthma and Allergic Disease Center at the Beirne Carter Center for Immunology at the University of Virginia Health System in Charlottesville, VA 22908.  Please contact this center for additional insights, suggestions for other treatment options, or clinical trials.

[CINDY4]

My daughter has a systemic eosinophilic disease.  Yes, the Gi and sinus disease can certainly be linked.  My daughter has Churg-Strauss, with involvement of her GI, lungs, sinus, and nerves.  She has also had 2 sinus surgeries and still has severly affected sinuses.  Look up this disease and see if you think it fits.  Has he had much bloodwork done?  Have they checked his blood eosinophil counts?  If not that would be a first step.  If he is on steroids it can normalize the bloodwork.  We have been through it all, just ask if you have a question.

Cindy

[jr43]

A related discussion, chronic hyperplastic eosinophilic sinusitis was started.